My Diabetes My Way: Clinical Outcomes Impact and User Experiences for an Electronic Personal Health Record for Diabetes

Authors: SG Cunningham; B Allardice; M Brillante; L Wilson; DJ Wake

Introduction: My Diabetes My Way (MDMW) is NHS Scotland’s interactive website for people with diabetes and their carers, currently with over 26,000 registrants. It contains multimedia resources aimed at improving self-management, including information leaflets, interactive educational tools and videos. MDMW also offers access to clinical data via a novel electronic personal health record (ePHR), which sources data from primary care, secondary care, specialist screening services and laboratory systems. This merged record provides a more complete overview of diabetes than is available from any single data source. Patients use MDMW to share information with healthcare teams, through automatic data upload, secure messaging and online forums, further enhancing communication. Patients also set and record goals and receive automated highly-tailored advice and guidance based on the current status of their results.

Aim: We aimed to evaluate user experience of the records access service and assess impact of MDMW on routinely collected process outcomes.

Methods: In January 2015, an online evaluation survey was emailed to 3,979 active users of the MDMW ePHR to assess experiences and perceived benefits. Survey Monkey was used to capture results for each unique respondent, using a series of open and closed questions to detail the impact on patient satisfaction and ability to self-manage. In April 2017, clinical outcomes were assessed using time-series analysis by comparing the HbA1c recordings of the intervention cohort (active users) with those in the inactive background patient population, matched by age, duration of diabetes, socioeconomic status and gender.

Results: 1,095 (27.5%) active users completed the user survey. Patients report that MDMW improves their knowledge of diabetes (90.3%) and their motivation to manage it better (89.3%). It allows them to make better use of consultation time (89.6%) and means that they do not need to keep paper records (84.4%) or phone their doctor for results (85.2%). Users found graphs helpful to monitor changes (95.9%) and 83.5% said the system helped them meet their diabetes goals. Additional results: 92.1% - system contained all expected features; 87% - reminded users of information discussed at consultations; 85.7% - system was up-to-date; 89.1% - system was easy to use; 94.2% - supporting information helped understanding of results; 93.7% - helped find information tailored to own diabetes; 96.7% - confident the system was secure; 88.2% - helped manage diabetes better; 89.8% - helps set own goals; 96.4% - system will significantly improve diabetes self-care in Scotland. Anecdotal feedback:
 “Immensely satisfied with the system.  Really amazing to see my results online.  Real motivator”
“I don't have to make appointments to see GP or nurse which is good as I work and don't like taking time off work”

1,892 active users of MDMW had 3 or more years follow-up since first login. There was a reduction in HbA1c in all active users (p<0.001), with patients with type 2 diabetes not treated with insulin (n=943) showing most significant and sustained changes. In this group, the intervention cohort reduced from 59 to 54 mmol/mol (females) and 58 to 53 mmol/mol (males) within 1 year, while the matched cohort reduced from 58 to 57 mmol/mol (females) and 58 to 57 mmol/mol (males) during the same period. Intervention patients remained between 4 mmol/mol (females) and 3 mmol/mol (males) below their matched counterparts at 56 mmol/mol after 3 years of follow-up, showing a significant (p<0.001) sustained reduction.

Discussion and Conclusion: MDMW is an effective low-cost population-based self-management intervention. Patients report enhanced knowledge and understanding of diabetes and motivation to make positive changes following MDMW use. The service is acknowledged as a key resource to help achieve strategic aims for the diabetes population in Scotland. Whilst the HbA1c reduction demonstrated is clinically small, when extrapolated across a large population, MDMW may offer significant cost savings through reduction of long-term complications and treatment costs. Improvements are sustained at 3 years compared to the matched cohort. UKPDS suggests an 11mmol/mol HbA1c reduction relates to ~21% complication reduction, with current diabetes complications costing £3,000/annum per person in UK. Further economic modelling and risk factor analysis is planned. We believe this is the first time any population-based records access platform has demonstrated impact on clinical measures. We are actively pursuing opportunities to extend the service into other parts of the NHS and overseas.

My Diabetes My Way: clinical outcomes impact and user experiences for an electronic personal health record for diabetes